The modern-day American hospice movement began in 1974 with establishment of the Connecticut Hospice in New Haven. It was founded on the model of care best identified with Dame Cicely Saunders, MD, who opened her now-famous Saint Christopher’s Hospice in 1967 in Sydenham, England. This center became the model for comprehensive whole person and family care at the end of life.
Hospice programs have been at the forefront of efforts in America to involve and include families in providing quality end-of-life care.
2. What is hospice care?
Considered to be the model for quality, compassionate care at the end-of-life, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is extended to the patient’ s loved ones, as well. At the center of hospice is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so. The focus is on caring, not curing and, in most cases, care is provided in the patient’s home. Hospice care also is provided in freestanding hospice facilities, hospitals, and nursing homes and other long-term care facilities. Hospice services are available to patients of any age, religion, race, or illness.
3. How does hospice care work?
Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff are on-call 24 hours a day, seven days a week.
The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control. The team usually consists of:
- The patient and family/caregiver;
- The patient’s personal physician;
- Hospice physician (or medical director);
- Hospice aides;
- Social workers;
- Clergy or other counselors;
- Trained volunteers; and
- Speech, physical, and occupational therapists, if needed.
The plan also outlines the medical and support services required such as nursing care, personal care (dressing, bathing, etc.), social services, physician visits, counseling, and homemaker services. It also identifies the medical equipment, tests, procedures, medication and treatments necessary to provide high-quality comfort care.
4. How does the hospice work to keep the patient comfortable?
Many patients experience pain and other distressing symptoms as illness progresses. Hospice staff receive special training to effectively anticipate, assess, treat, and prevent all types of physical symptoms that cause discomfort and distress. Because symptom management, especially pain, is such an important component of hospice care, many hospice programs have developed ways to measure how well they do in this area through surveys and studies. Hospice staff work with the patient’s physician to make sure that medication, therapies, and procedures are designed to achieve the goals outlined in the patient’s care plan. That plan is evaluated frequently to reflect changes and new goals.
5. What kinds of services should I expect from a hospice?
Hospice services are available to patients with life-threatening illnesses who can no longer benefit from curative treatment and usually have life expectancies of six months or less, as determined by a physician. Hospice services typically include:
- Physician services for the medical direction of the patient’s care, provided by either the patient’s personal physician or a physician affiliated with a hospice program;
- Regular home care visits by registered nurses and licensed practical nurses to monitor the patient’s condition and to provide appropriate care and maintain patient comfort;
- Hospice aide and homemaker services attending to the patient’s personal needs;
- Chaplain services for the patient and/or loved ones, if desired;
- Social work and counseling services;
- Bereavement counseling to help patients and their loved ones with grief and loss;
- Medical equipment (e.g. hospital beds);
- Medical supplies (e.g. bandages and catheters);
- Drugs for symptom control and pain relief;
- Volunteer support to assist loved ones;
- Physical, speech, and occupational therapy; and
- Dietary counseling.
6. Is hospice available after hours?
Hospice care is available “on-call” after the administrative office has closed, seven days a week, 24 hours a day. Most hospices have nurses available to respond to a call for help within minutes, if necessary. Some hospice programs have chaplains and social workers on call, as well.
7. Can I be cared for by hospice if I reside in a nursing home or other type of long-term care facility?
Hospice services can be provided to a terminally ill person whose place of residence is a nursing home. This means the patient receives specialized visits from hospice nurses, hospice aides, chaplains, social workers, and volunteers, in addition to other care and services provided by the nursing home. The hospice and the nursing home should have a written agreement in place in order for hospice to serve residents.
8. How does hospice care begin?
Accessing our hospice care is simple. It only takes one phone call. We meet patient needs and make it easy for everyone to get the care to which they are entitled. Hospice care is available to patients with an advanced illness. Anyone can call State of the Heart Hospice to receive information about hospice services. We offer support to patients and families 24 hours a day, seven days a week. State of the Heart Hospice will also contact your physician to ensure that the patient is eligible for the hospice benefit.
9. What kind of support is available to the family/caregiver?
In many cases, family members are the patient’s primary caregivers. Additionally, hospice recognizes that loved ones have their own special needs for support. As a relationship with the hospice begins, hospice staff will want to know about the primary caregiver’s priorities. They will also want to know how best to support the patient and family during this time. Support can take many different forms, including visits with the patient and family members; telephone calls to loved ones, including family members who live at a distance, about the patient’s condition; and the provision of volunteers to assist with patient and family needs.
Counseling services for the patient and loved ones are an important part of hospice care. After the patient’s death, bereavement support is offered to families for at least one year. These services can take a variety of forms, including telephone calls, visits, written materials about grieving, and support groups. Individual counseling may be offered by the hospice or the hospice may make a referral to a community resource.
10. What role does the physician play?
It is important to find out what the role of the patient’s primary doctor will be once the patient begins receiving hospice care. Most often, hospice patients can choose to have their personal doctor involved in the medical care. Both the patient’s physician and the hospice medical director may work together to coordinate the patient’s medical care, especially when symptoms are difficult to manage. Regardless, a physician’s involvement is important to ensure quality hospice care.
The hospice medical director is also available to answer questions you or the patient may have regarding hospice medical care.
11. Will I be the only hospice patient that the hospice staff serves?
Every hospice patient has access to a registered nurse, social worker, hospice aide, and chaplain. Typically, full-time registered nurses provide care to about a dozen different families. Social workers usually work with about twice that number. If needed, hospice aides, who provide personal care to the patient, will visit most frequently. All visits, however, are subject to the patient and family needs as described in the care plan, and the condition of the patient during the course of the illness. The availability and frequency of spiritual care is often dependent upon the family request. Travel requirements and other factors may cause some variation in how many patients the hospice staff can serve effectively.
12. What role does the hospice volunteer serve?
Hospice volunteers enhance quality of life and help reduce the burden of caregiving. They are generally available to provide different types of support to patients and their loved ones including running errands, preparing light meals, staying with a patient to give family members a break, lending emotional support and companionship to patients and family members, and helping out with light housekeeping.
Because hospice volunteers spend time in patients’ and families’ homes, it is important for a hospice program to have some type of application and interview process. In addition, hospice programs should have an organized training program for their patient care volunteers. Areas covered by these training programs often include confidentiality, listening skills, signs and symptoms of approaching death, working with families, loss and grief, and bereavement support.